I Can No Longer Enjoy These Luxuries Because of IPF
If I could give strangers one gift, it would be that they never take their healthy lungs for granted.
I’ve longed for a life with fully functioning lungs for 1,854 consecutive days. That’s how long it’s been since I was diagnosed with idiopathic pulmonary fibrosis (IPF) at the age of 28. IPF slowly steals away one’s ability to breathe as scar tissue, or fibrosis, builds in the lungs and prevents adequate oxygenation.
While still uncommon in those under 40, IPF increasingly is affecting more young adults than in the past. I see it every day when people contact me after being diagnosed. They want to talk with someone who has been through the diagnosis process and has lived with this hideous disease for years.
Many worry about how the disease will affect their future, and I wish I had something upbeat to tell them. Unfortunately, though, IPF has a profound impact on the lives of those diagnosed with it, particularly on young people. Without a lung transplant, our future as young adults is threatened because IPF is a fatal and life-threatening lung disease.
I try not to dwell on the difficulties and changes IPF forces upon our lives, but sometimes staying positive is hard. This is especially true for those who lived an active lifestyle before diagnosis. That was my life before IPF entered the picture in April 2016.
Sometimes voicing these difficulties helps. For me, getting it down on paper helps me release my frustration. That is why I wanted to write this column about some of the luxuries I can no longer access as an IPF patient.
Healthy young adults might take the following things for granted. They are things I deeply miss doing on my own.
Exercising independently
An abundance of literature highlights the importance of exercise for patients with IPF. Most notably, exercise can help maintain lung function, along with a healthy diet and lifestyle. It’s something many people do to keep stress down, but the luxury of being able to exercise by myself has been stripped from me as a result of IPF and various safety concerns.
Prior to getting sick, I found solace in going for long walks, especially on summer evenings, when I would watch the sunset or breathe in the cool air after a hot day. As my lung disease progressed, it became too risky to do this alone, in case my oxygen saturations dropped or I got into trouble and couldn’t run away from a situation.
Not answering my phone
A close friend and I coined the term “turtle-ing,” which refers to the need to hide inside our homes to avoid others, as if we were in a turtle’s shell. Usually we need to do this after a chaotic week at work or to prioritize our mental health. This is our introverted personalities shining through.
Unfortunately, being able to “turtle” has become nearly impossible because of IPF. People panic if I don’t answer my phone for prolonged periods of time. They think something has physically happened to me, rather than understanding that I just want to be alone in my shell to embrace the quiet or the comfort of home. The luxury of turning off my phone or not answering it has been taken from me as a result of this cruel lung disease.
Going on spontaneous trips
I used to be described as fiercely independent and free-spirited. I would take off and do whatever I felt like doing on my own. (Did I mention I spent weeks alone in Hawaii and loved it?)
Unfortunately, my ability to take spontaneous trips is now complicated by the fact that I need to proactively plan and manage my medications and oxygen needs. While I’m literally tethered to oxygen by nasal cannulas, sometimes it feels as if my disease were figuratively tethering me to a life absent of spontaneity. And I hate that.
Home comforts
A fireplace is a luxury in many homes, as it offers a place to comfortably curl up and read or watch TV. Another luxury is a backyard BBQ spot. Because I have supplemental oxygen in my home, these luxuries have been taken from me. I don’t have a BBQ or a fireplace because of the risk, although both are things I wish I had for comfort and enjoyment.
What things or activities have you given up due to IPF? Please share in the comments below.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Kristina Smith
I am 58 and my IPF appeared 5 years ago along with small cell carcinoma lung cancer, stage 3b diagnosis and only a 12% chance of surviving. I eat well, have a healthy weight, was a spinning instructor and lead an active life. I worked really hard to recover from my cancer treatments which included, lung radiation, brain radiation, and two types of chemo, lost my hair twice. I did acupuncture, massage therapy, yoga, had a personal trainer and had a great attitude. My IPF was ignored by my doctors because their biggest concern was treating my cancer. All I was told is that I had scaring on my lungs but didn't receive a diagnosis of IPF until three years after my cancer treatments. This diagnosis was devastating to me after all I had been through with the cancer. The not knowing how long you have to live was scary for me. At least with the cancer I knew I had a chance to survive. I have taken both Esbriet and OFEV and couldn't tolerate either. Both medicines made me so sick I couldn't live a normal life. I know struggle with simple tasks like changing the sheets on my bed, walking up and down stairs, gardening and feel confined by my disease. And I hate that I am constantly asking for help from others because I can't do so many things I used to be able to do. To look at me I don't look sick so people don't understand my situation. I feel lost and lonely.
Charlene Marshall
Hi Kristina,
Thank you for reading my columns and reaching out via the comments. This disease is so cruel, and it seems so incredibly unfair that you now have it after a fight with lung cancer! I'm really sorry to hear it wasn't picked up until a lot later, and that you aren't able to tolerate either of the anti-fibrotic drugs. Have you discussed a possibility of a transplant with your team? Your age might qualify you but I don't know how it works for sure with survivors of other diseases, like cancer. It's also a lot to go through! Since this disease is invisible, aside from oxygen, it's also really hard for others to understand what we're going through. Do you use 02? Feel free to reach out anytime or join our forums:http://pulmonaryfibrosisnews.com/forums/ . The loneliness can be really hard, but know that others are here for you and truly "get it". Keep in touch.
Char.
CATHERINE JAMESON
I can surely relate to the limitations of IPF. I was diagnosed in 2005 and by 2006, I needed a wheelchair to go anywhere as I could not walk anymore without getting totally winded. I had a double lung transplant in 2007. Its been 14 years now as of St Patrick's Day 2021. YAY. good luck everybody....hard road to go down for sure..
Charlene Marshall
Hi Catherine,
Thank you so much for reading my columns and reaching out via the comments. Incredible news about your transplant 14 years ago -- how wonderful to hear your story!!! :) Thank you for sharing and wishing you many more easy-breathing years ahead!
Char.
Brie
I can no longer tolerate ..
* showers (humidity)
* summers (hot humidity)
* cooking on stove (heat,strong odors)
* all colognes
* cigarette smoke
* bending over/squatting
* large meals
* all bra's
* and the list goes on & on.
I was finally diagnosed five years ago after several years of struggling with my breathing.
Charlene Marshall
Hi Brie,
Thanks so much for reading my column and reaching out via the comments. Your list of things you can no longer tolerate really resonates with me; I feel like I could have made a chapter out of my column, adding so much more to it. The smells really bother me too and lately, I'm noticing large meals or food that is processed at all, cause my breathing to worsen. It's so frustrating!
Thanks for writing, though so sorry you're also dealing with this cruel disease.
Charlene.
Karol Mcguire
Charlene,
I've been reading your column and wanted to reach out about something I recently read."Scientists find Mechanism that Eliminates Senescent Cells". The recent discovery points to potential immune therapy for chronic disease and fibrosis. Anil Bhushan, PhD, a professor of medicine at UCSF in the Diabetes Center and senior author of the paper, which appears May 10, 2021, in Med.
Charlene Marshall
Hi Karol,
Thanks so much for reading my columns and reaching out via the comments. I haven't read that article, but personally believe the future of medicine and the cure to many diseases is actually in immune and/or stem cell therapies. There isn't a credible source of this right now, that I know of, but I'm always interested in learning more about it. Plus UCSF have amazing physicians at their facility who are knowledgeable about fibrotic diseases. I look forward to reading this - thanks again for sharing!
Char.
Mary Ellen
I would like to hear more about IPF and heart disease, specifically how a healthy heart is affected by IPF. Both best and worst scenarios.
Charlene Marshall
Hi Mary Ellen,
Thanks so much for reading my columns and reaching out via the comments.
Unfortunately, with not having a medical degree, I am wary of writing about IPF and heart disease as this is specifically out of my scope of knowledge. I know some people have shared their personal experiences with IPF and pulmonary hypertension on our forums:http://pulmonaryfibrosisnews.com/forums/ but that wouldn't be a medical opinion. To understand the relationship between IPF and heart disease, it is likely best to speak with your doctor directly. Is this a possibility?
Charlene.
triminda k williams
Living with Plumonary Fibrosis, COPD, Pulmonary Hypertension, Sarcodosis stage 4, Chronic Pneumonia, Chronic Respiratory failure, and to make matters more difficult Tracheomalacia. There are other factors, as diabetes etc.. The main point here it's been two years since my dire prognosis. I am in the my third year now, and everyday I feel some part of me giving up. The one thing that these diseases has taken from me is the ability to have a pet. I was born with under developed lungs. It's a bummer but it didn't stop me the way my life is now. I live alone, and I need my own space. I 've always have been a loner, and very comfortable being alone. I am a very strong person like my father who had the spirit of a lion. But I know what's it feels like to be in the end stages of my diseases, and I can't give up. Walking across the room is difficult, taking a bath is damn hard becuase it wares you out. Normal things that people do is almost impossible for me. But, I have my own place of residence I keep a clean house. I do everything myself until last week. I was taking a shower, and tried washing my hair. I didn't realize my trach was uncapped. All of the sudden I felt this burnng sensation and I started coughing so hard, and couldn't catch my breath. I stepped out of the shower, and then I realized that I that soap had gotten in the trach. All I could do was cough like hell, and I saw soap come out. That meant anything that comes thru my trach goes directly into the lungs. Everything happened so fast I didn't know if I should call 911? I couldn't talk. This the first time I have to admit I can't ever go thru that again. It's time that I accept help, and that includes help taking a bath. Somedays, I am so heartbroken, and other days I am thankful that God has given me the strength to do this alone. My only goal now is to protect my family, and not drag them down with me. I am in the hospital alot, and this time something inside me broke. Laying in the hospital I cried for three days straight, and knew I would have to die alone. Rather than hear someone complain about having to bring me a change of underware. I have always done the heavy lifting. I coordinate with all my doctors. I read my medical files, and have cried so hard at the things they don't tell me. I am shocked beyond belief that people are sent home not knowing they are much sicker than they think. I catch all mistakes. I don't need anyone to talk to my doctors. I don't need anyone to clean my house. I don't anyone to do absolutely nothing, sick and all I do it all. Why? am stubbornly self reliant. What most people don't realize your family can be the worst care givers, and resentment is also underneath the surface when your illness starts impacting their daily lives.So, I am not upset about that. All I want is one thing before I die, and that's to have a little companion. My Abby died a few years back. I was sick then with lung stuck, but having something to love and care for other than myself was wonderful. I never got married, and I don't have any children, so my little maltese poodle mix fit the bill perfectly. There were days, I wouldn't be feeling so great. But looking at cute little face has to say " come on mom" got me up, and going. When I was hospitalized with the pneumonia all I could do was think about going and getting Abby from the doggie hotel. I adopted Abby as a senior dog,and of course she had her special needs becuase of her age. I called and Abby had to be moved to a more advance suite becuase being that close to all of the barking of the other dogs caused her to shake. I thought I was going to be in the hospital for three days, well it turned into three weeks. I called and check on Abby everyday. As I laid there I was determined to get up, and go get my fur baby. Now days when I am in the hospital there's doesn't seem like there's nothing to fight for, and this is the critical point. Before, I became ill I knew of God. I was raised in the church etc..I had a great career, I traveled, and I had my own charities that I sponsored. I became part of the Bear the Burden Campaign that collected stuff animals so when the police would come remove a child they would give the child a stuff animal. Well, I adopted all the kids as my kids in my heart. I purchased hundreds of Teddy bears year around, and wrapped them all by myself starting in Oct. and it took me two, and a half months to get them all ready to go. I never went to visit these children who were housed at a childrens home. My next project was the ladies at the Womens Shelter. It took me months to get all the baskets of make up, and everything they needed to feel pretty. I sent those on Xmas it took me months to get their baskets ready for Xmas. I didn't go there either. Easter I made floweral baskets for the Seniors at the nursing homes. Last but not least I made doggie coats for animal shelters in Minnesota. Poor Abby was my model we made over three hundred coats. So you see I had a lot to do. But this disease took all of this from me! I don't care about how long I have, but I do care about not being able to give some part of myself to someone else. Then Abby died, and to this day I still haven't gotten over it. Even in sickness it's still apart of me who needs so desparately to find a purpose. So here's the kicker I have so much material I was getting ready to start a new season of coat making, when Abby died unexpectantly of congestive heart failure. So tonight all I can say is on one hand thank you God for allowing me to become ill becuase it brought me back to you. It made me understand things that had this not happened to me I wouldn't have thought of. I am thankful becuase I know when my journey in this world ends, I new life is waking for me with our Lord and Savior Jesus Christ. So if this was what it took to open my eyes, and my heart to God than it was worth it, and I wouldn't change a thing. This disease took away so many things that my heart still yearns for. Oh, I talk to God all the time. There have been times I've been quite frustrated. Now I know how Job felt. Well I feel better now, and hope I didn't sound like an wind bag. Sometimes when one door closes another does come open. The only thing that I regret is not being able to have a another furry friend. Reach out to people. Look to God even when you are mad that you are in this position. Please understand it's only natural to be angry and scared at first.There were days I would be having a good cry, and would think pull yourself together, this is weak. Then one day during one of my crying spells. I remember when Jesus was waiting in the garden for the Romans to come for him. Jesus was praying to God. Jesus knew what was going to happen to him, but yet he prayed so hard that sweat was thick, and he was in anguish. Then an angel came down and strenghten him. From that moment I knew I was being to hard on myself. I pray to God for strenth, faith, and courage. If all possible I want to leave something for others to use. I am alive to day,becuase of the Lord isn't done with me yet. Also, the lord blessed me some of the most caring doctors I've have ever known in my entire life. They fight for my life in the trenches, and never bother me about payment. For that I am grateful. Take Care, hang in there, Mindy
Charlene Marshall
Hi Mindy,
Thank you for reading my columns and reaching out via the comments. Your story is one of resiliency and strength no doubt, but it also must be so hard doing these things alone with your diagnoses'. While I can imagine asking for help to do some of those activities of daily living must be tough, I hope you find some comfort in saving some of your precious energy for other things you enjoy. I too wish you could have a furbaby companion, and so sorry for the loss of your Abby. Keep close your faith and thank you again for writing. Take good care,
Charlene.
Sherrill Ryan
I understand Charlene’s frustration with changes in lifestyle foisted upon us due to this disease. My husband and I have traveled far and wide since retirement, visited our kids and grands and siblings frequently. Now with this IPF attacking my body, those parts of our lives are stolen from us including the pandemic. Hard to be upbeat!
Charlene Marshall
Hi Sherrill,
Thank you so much for reading my column and reaching out via the comments. Sorry to hear you can relate to the content of it, and how this disease steals so much from us. I'm also frustrated for you that not only is PF taking this from you, the pandemic is too. These are exceptionally tough times! Hang in there and please don't hesitate to reach out for support if you need it. Thinking of you and wishing you and your husband well.
Kind regards,
Char.
Julie Grace
Dear Charlene, A well written article on the reality of IPF. It has been a debilitating disease for my husband diagnosed in 2019. We have gone from a comfortable, active lifestyle to now hospice. Our hopes were dashed when he was turned down for a lung transplant & it has been a downward slope since then. The things we miss the most would be too numerous to list.
Charlene Marshall
Hi Julie,
Thank you so much for reading my column and reaching out via the comments, though I am so sorry to hear about your husband. Yes, this is a cruel disease and slowly steals so many things that bring us joy. I'm sorry you're both dealing with it. Take care and sending your husband lots of love and prayers.
Char.
Pat Hamilton
Love to read all your comments. It makes feel I am not alone with my symtoms.
Charlene Marshall
Hi Pat,
Thank you for sharing and that I'm so glad you've found my column. It certainly helps to feel we aren't alone, and please don't ever hesitate to connect... we're here for you! Take good care, and thanks for the kind words.
Charlene.
Gayle
Three years in. Finally starting on Esbriet soon. I look normal on zoom. ha ha. I had an exacerbation and have to use oxygen to walk further than my driveway. First, I miss the active stuff: kayaking, swimming laps, hiking, singing, energy!! etc. All those things kept me fit and active. Secondly, I miss the social stuff --this is Covid, but, I also have leukemia so even though I had two vaccine shots, it now looks like I'm only partially resistant. So, I hung in there for a year but now I miss all the normal stuff that will happen once Covid is over: movies, shopping, parties, and most of all my grandkids under 12--and flying to see them in the Midwest! I need oxygen to fly and it seems unpredictable how much. Well, I am isolating. Many friends don't understand why they don't see me. Hard times to be in a bubble alone with your depressing thoughts. I always used to go and and see people which would raise my spirits. No more. Maybe that's more Covid, but it's Covid with IPF for sure. Thanks.
Charlene Marshall
Hi Gayle,
Thank you so much for reading my columns and reaching out via the comments. Sorry you're also dealing with this cruel lung disease; I certainly resonate with missing the active and social stuff. Rest assured that (depending on your 02 needs) you can fly with oxygen, I've done it several times since being diagnosed with IPF. You should talk to your doctor about a high-altitude simulation test (HAST) and that should help you to get the 02 you need while flying. So sorry to hear your friends don't understand, and the social isolation is so tough, especially when the risks are so great for us. I'm glad you're vaccinated and let's hope things improve soon!
Char.
Randall Thornton
Good afternoon everyone. How is Charlene doing today? I really enjoying reading all the write ins. Miss Williams, as I read your things no longer able to do, the tears started flowing. I am so much like you as far as not being able to do things I used to do, but cannot anymore. I had to put my dog to sleep just before I ended up in the hospital. She had cancer for the 2nd time. This is really ticks me off. I never had to rely for others for much, I could do it. Now, I have problem bringing in groceries from the car. I could do carpenter work (had my own shop). Get on the roof to do the swamp cooler. Now, it has to be someone else doing it. But, I try my darnest to do things. I give it a try but after a few minutes, have to stop and rest. Raking the yard, mowing, cleaning the dog pen, not enough oxygen. Other things I miss is camping and ATVing. Getting up in the mountains and being free in the forest, no cell phones, no traffic and listening to the animals like wolfs howling at the moon. The big thing is not being able to visit the grandkids. I have to go over the Rockies to do so, to high. I am running a minimum of 5 on my oxygen and would need more to go over the Rockies. So, yes we all are missing out on something we use to do, just effects us all differently. Have a good afternoon everyone.
Charlene Marshall
Hi Randall,
Thanks so much for reading my columns and reaching out via the comments - so nice to hear from you! I am doing well thanks, so much for asking. I'm so sorry to hear of the loss of your dog; to be honest, that is one of my greatest fears. This disease is so cruel and I'm so sad it takes so much from us. So sorry you're dealing with the shortness of breath from this disease, and that it is also causing you to miss out on the things you love. Hang in there and thanks for writing!
Char.
Bob
Hi Charlene,
I share some of your things you love. We travel yearly to Maui except this year. Out door and indoor fireplace burning has been our social setting for 50+years. We live in a rural area and burn outside at the pit all when’d long and usually nightly inside. I still participate equally tho on home oxygen. Ours in not liquid or will it start a fire but would enhance one. Big difference. Be safe. Got 2 new lungs May12/2021& had the biggest breaths ever yesterday. Have had IPF for 5+ years and went to the hospital emergency May 12th. As i had out lived our home supply and they couldn’t offer anything. With in 2 hrs a Transplant doc said they had a donor and i almost fainted. Today is day 6 of recovery and i am receiving no supplemental supply and my oxidisation is 98%. Good Luck to you all
Charlene Marshall
Hi Bob,
Thanks so much for reading my column and reaching out via the comments. It's hard to give up some of the things we love due to a pandemic, isn't it? I felt some resentment towards COVID-19 because with IPF, I didn't have all the years to make up for what the virus made us lose. That is how I feel on my difficult days, anyway. Sorry you had to miss your trip to Maui.
I'm so happy for you to hear of your transplant, how wonderful is that... congratulations! Keep in touch and best wishes for your recovery. Enjoy those beautiful deep breaths, they certainly are to be cherished :)
Char.